Thanksgiving and Whack-A-Mole

A strange title for another month of ups and downs. Thanksgiving week was an exciting time for the Brookharts. Bonnie and Carolyn flew home Tuesday night from their college hunting trip. They left Thursday for Boston where they visited at least 6 colleges over 4 days as well as spending 2 nights with my sister, Amy. They then flew through Chicago (where Carolyn and Bonnie's bad luck with O'Hare continued) to Iowa where they visited Grinnell. Evidently the trip was a success since Carolyn saw a couple of schools that she really liked. Unfortunately the ones that she likes are very selective so despite her excellent grades acceptance is not assured.

Wednesday night Lauren came home from U of Oregon for Thanksgiving and there was much rejoicing (especially by Devin, her boyfriend).

After such a challenging year I was a bit surprised to find that after thinking about the theme of Thanksgiving that I had so much to be thankful for: Bonnie, my doctors, especially Drs. Yom and Fong, Glen, Tom, Vince & Mary, my sisters, my friends, my collegues, refereeing and my recovery thus far. We had a wonderful meal at our house with our friends the McGoverns and Lauren's boyfriend.

I've been making steady progress toward normal work duty. The second week of November I made my first business trip since my diagnosis. I started off visiting my good friends John & Colleen D. along with Vince and John F. John and Colleen changed their vacation destination last April to California to include a visit to me during some of my darkest days. It was really nice to return the favor. It was even better to see John doing significantly better than the last time I saw him. He has persevered and is still improving years after his second stroke. He is an inspiration to a lot of folks, including me. The technical part of the meetings went well and I really enjoyed interacting with my friends at ExxonMobil. I was a little tired after a long week on the road, but I felt ready to attempt an overseas trip. Thus, the week after Thanksgiving I was off to Rotterdam.

Again, it was a bit more tiring than previous visits but it went well enough. It was especially nice seeing my R&D group again on their turf. As a special treat we had dinner with Dick and Trudi. Dick retired earlier this year after over 30 years with Chevron, most of them in the Marine division. Dick and I worked closely together with ExxonMobil for the 10 years I've been in Marine and it was a relationship I thoroughly enjoyed, both professionally and personally.

The FDA finally approved the use of the gardasil vaccine for boys. It's the vaccine that protects against the HPV viruses most likely to cause various cancers; cervical in women, penile in men, anal, and squamous cell like Tom, Glen and I have had. So finally I was able to start the vaccine series of 3 shots over 6 months for Dashiell. (The girls were vaccinated before I was diagnosed.) I fought Kaiser to vaccinate Dash before the FDA approval was granted but wasn't making a whole lot of progress. Hopefully this will eliminate the chance that he has to go through what I have gone through.

The road to recovery continues to be two steps forward and one step back. The whack-a-mole reference alludes to my view of the last couple months where I no sooner resolve one health challenge than a new one (or a previous one I thought resolved) emerges. My latest challenge is dental. I have developed what the doctors and dentists refer to as a bone emersion near the site of the tooth I had extracted in August. The flesh in my mouth near the back of my jawbone has receeded so that a small part of my jawbone has appeared. I've been told by 2 of my dentists that is does happen to some folks who have a tooth removed even if they didn't have radiation therapy. That's somewhat comforting but the truth is that if the bone gets infected it could degrade into the dreaded osteoradionecrosis that I was worried about when I first had the tooth removed. I thought that threat was gone but not quite. The best prognosis is that the flesh will grow back behind the exposed bone and ultimately the exposed part will be able to be peeled away like an old scab. My oral surgeon is taking a conservative approach to avoid disturbing the natural process. A small piece of bone flaked away yesterday but the area exposed stayed the same as before. It had about tripled in size over the last 3 weeks. I wonder what will be the next challenge after this one is resolved?

This Friday will be the one year anniversary of my diagnosis. What a year! This Christmas should be quite a bit better than last year.

A Forget-Me-Not From the Big C

The last update accurately reflected by mood after finally getting off all of my drugs. I felt great. My life wasn't back to normal but it was making steady progress. My main focus was improving my quality of life. The most significant effort at that was signing up for the acupuncture clinical trial.
On the morning of September 19th I came crashing back down to earth. Eerily reminiscent of when I first found my cancer, I was putting sunscreen on my neck prior to reffing a soccer match and noticed the area on the left side of my Adam's apple was larger than the right. My heart sank. Five months after treatment seemed like the most likely time for recurrence. I had visions of surgery; losing my larynx, my voice; of the cancer being untreatable this time. I emailed both my doctors. The weekend went by in a haze. I felt like an actor in a play; the outcome preordained. I felt powerless to change it.

My doctors came to the rescue, again!

Dr. Fong emailed me Monday morning that he would squeeze me in between appointments Monday afternoon. Dr. Yom arrived at the start of my acupuncture appointment on Monday morning at UCSF and did a thorough physical exam. I was incredibly relieved when she told me that she thought it was nothing to worry about but that I should get a needle biopsy just to be sure. I told her that I was seeing Dr. Fong in the afternoon and I would pursue it with him. Dr. Fong agreed that it was very unlikely this was cancer. He felt it was probably a collection of lymphatic fluid that had nowhere to go due to the destruction the radiation had inflicted on the lymphatic system in my neck. Before he did a needle biopsy he wanted to get an undisturbed MRI image to examine. The MRI appointment was set for Sunday.

I was so relieved to hear both of my doctors agreeing that the swelling was unlikely to be cancer. And just in time, because on Wednesday Bonnie and I would drive our firstborn up to Oregon for her freshman year of college. As expected, it was a bittersweet experience. We were so proud of our mature young lady leaving the nest, but we knew that this was the most significant step on her road to independence and that our life with her would never be the same. Luckily we were so busy getting her moved in on Thursday and tracking down last minute stuff for her that the time went quickly. That evening we had a nice dinner with her roommate Ariana's parents who live around the corner from us in the Knolls.

Glen, my guide through all this, was also up at UO dropping off his sophomore son. We were to have a quiet breakfast on Friday morning with him and his wife, but the kids got wind of this and our party of four swelled to ten, including Ari and her parents! It was a wonderful way to say goodbye and I did get some time to bring Glen up to date and compare notes.

On the way home, Bonnie and I stopped for the night in Ashland, home of the Shakespeare festival, and took in another play, Henry VIII. Our seats were great and we both really enjoyed the performance. We returned home on Saturday around 4 pm. On Sunday I had an uneventful MRI and then impatiently waited for the results. I figured I'd hear late Wednesday or Thursday.

It was a busy week due to our Global Marine Meeting at work. For the first time since my diagnosis I was able to see my team from Rotterdam and the rest of the overseas Marine team. I really like my job and the relationship I have with the team is a significant part of that. After all I've been through this year, I value our friendships even more. It was wonderful seeing them and interacting with the group just like before. The moments of normalcy were almost intoxicating!

As an aside, I know some of my imagery through this blog sounds a bit over-the-top, but to me it sometimes feels akin to describing color to the blind. There are times, not all the time mind you, but there are times when the sensory/emotional input seems more intense than before. The color and scent of a rose are more intense, like I am squeezing all the color and all the scent out because I know in my bones that life is short.

It was a busy busy week with a business dinner on Tuesday where I met some additional old friends from work that I hadn't seen in over a year and two more dinners on Wednesday and Thursday. I had UCSF appointments on Thursday and Friday, reffing Saturday and Sunday and a Quakes game with Tom on Saturday night! I was tired after all that but my weight stayed above 150 and best of all I got the perfect email from Dr. Fong Wednesday afternoon! The first words were "Your MRI looks great!" That was followed by the usual medical jargon but Dr. Fong knew that I wanted the bottom line up front and in plain English. And I know the instant he received the radiologist's report, he sat down and forwarded the results to me. I am so lucky to have such great people as my doctors. Don't get me started on health reform.

My weight continues to bounce around but the trend is up. After dropping to 144 in September I have been above 150 now for weeks and seem to hit a new high every week. The latest is 157. Life is still not without its setbacks though. I pulled my deltoid muscle a few weeks ago just reaching for something and I re-injure it a couple times a day; frequently by taking out my wallet or tucking in my shirt. I guess the muscle there is too small to deal with the effort of just moving my arm.

So life continues with a bit less zest than I had in early September. I got the message. I'm not out of the woods yet. Improving my quality of life is a good thing to focus on but my number one priority is getting to year five without a recurrence.

Drug Free At Last!!!

As usual the last month has had its ups and downs. I hit my all time low in weight (144). I expected withdrawal symptoms when I finally cut my pain patches from one to zero since I had them when I went from two to one, but it was worse than I expected. This time I had severe insomnia and the insects under the skin for 6 nights; severe being defined as not being able to get to sleep before 4am (most nights it was 5 or 6am). Then I had milder insomnia for another 6 nights which was not getting to sleep before 2am and waking during the night for 1-2 hours. I was feeling like a zombie and consistent with the past I lost weight; setting a new low. Finally after almost two weeks I was able to sleep through the night (except of course for the bio breaks that most guys my age are familiar with).
But after all that I am feeling GREAT because I am now DRUG FREE!!!!
If you haven't been on 9-10 drugs for almost 6 months you just can't understand how great it feels to be clean once again. All my previous depression has been washed away. I still look anorexic but I feel sooo much better.
I reffed a couple matches over the weekend. Granted they were just U9 ARs but it was fantastic being out there again after thinking at times that I'd never ref again. I admit I was a bit ambitious when I took 4 games this weekend but they are lower level games and it's time to test myself a bit. I've been feeling pretty fragile the last months both physically and mentally but hopefully that's over now. I still have to be careful to not get sick, but I want to act as normal as possible now.
Next week I have meetings in the office for 4 days straight. Then the following week Bonnie and I will take Lauren up to Oregon to start college and the week after that I have meetings in San Ramon for 3 days. If I can keep my weight up after being away from the kitchen for all of that time then once I build up a bit more of a weight cushion I think I'll be ready to go back to my normal work schedule.
After all I've been through this year you probably would think I'm crazy to volunteer for another clinical study. Well maybe I am, but there is this promising treatment for improving saliva function in patients who have been irradiated like me. My impaired saliva function is one of the biggest quality of life negatives for me now so I'm motivated to improve it. Incredibly the only thing that has any promise of permanent improvement is accupuncture. The research on this is fascinating. Since there are not enough proficient practitioners, if this approach indeed works, they have merged ancient accupuncture with modern science and produced electro-accupuncture! They have found that they can stimulate the parasympathetic nervous system with a mild electrical current and get the same results as accupuncture with the needles. So I'll be treated twice a week for 12 weeks and hopefully I'll see significant improvement in the amount of spit I make. And as an added bonus there are NO drugs involved and NO side effects!! Sweet!
On another positive note, the great guy who has coached and supported me through all my trials had his 1 year from end of treatment scan and he is clean as a whistle. For us the first year is the most dangerous for recurrance so this is just fantastic news. WAY TO GO GLEN!!!!!

The ups and downs continue, but the overall trend is up. On the up side I met with Dr. Yom, my radiation oncologist, and Dr. Fong, my Kaiser surgical oncologist, and they both were pleased with my progress. Neither could find any trace of my primary tumor. On July 30th Dr. Yom felt that the secondary site was steadily shrinking. She actually had a difficult time finding it. Two weeks later when I saw Dr Fong and he couldn't find any trace of either tumor. That's obviously a good sign but they won't officially declare me free of this cancer until I hit 5 years from end of treatment. The probabilities really start to look great if I can stay clean for 3 years. So far the reports of the effectiveness of the treatment are as positive as possible. Just one more thing to be patient about. Sigh.

I'm now down to just 2 medications (Yeah!!): my opiate pain patches and an over-the-counter anticonstipation med. We cut my pain patches down from two to just one this Thursday. The good news is that I'm not experiencing any severe withdrawl symptoms yet. I'm just very tired and a little depressed. It helps to know that the depression is coming from cutting back on the med but knowing doesn't eliminate the feeling. Bonnie and the kids have been extra affectionate and that helps.

The constant battle to maintain my weight is starting to wear me down a bit. The slightest disruption to my eating schedule seems to consistently result in the loss of a pound or two which is damned difficult to regain. I'm probably still 4-8 weeks away from being able to gain weight. I'm looking forward to not focusing most of my day on eating. Hopefully, my eating speed starts to return to normal soon, too.

On the home front, Dashiell came home from his 4 weeks of camp, so we are 5 once more at least until Lauren goes to college next month. He had a great time and wants to go back next summer. Carolyn passed her driving test so we now have 2 teens driving and sharing a car. We're only 8 months from Dashiell getting his driving permit. (Bonnie's note: both girls didn't get their license until just a few months before their 17th birthday. I would like Dash to do the same.) It just doesn't seem possible. You may want to stay off the sidewalks! You have been warned. ;-)

Friday's tooth extraction went very well. In fact it was over before I knew it. My endodontist was right, the oral surgeon is very, very good: he showed me a large glob of infection attached to the end of the root and indicated that it definitely would have caused big problems later. He said my chance of getting osteoradionecrosis was small, and that the extraction was clean and the bone was bleeding well (evidently a good sign).

So other than having a sore jaw as the anesthesia wore off and being unable to eat for a few more hours (I was starving) I was in relatively good shape. I was on a limited diet for a few days which, of course, meant that I would lose 3 more pounds that I can't really spare.

Today, I had a root canal on a tooth that my endodontist suspected was dying. Sure enough, once he opened it up it was clear that the tooth was necrotic. He said we caught it in time so I shouldn't have any problems with it. Next week my regular dentist will do the crown prep for the tooth and I'll probably get the permanent crown installed a week or 2 later.

Dropping the pain patches to one 12-patch seemed fine at first, but we decided to go back up to two 12-patches due to some very bad insomnia that the reduction could have been causing or contributing to. It looks like we were right, since I slept through the night last night after 3 nights of only 2.5-3 hrs of sleep. It looks like I might have pretty severe insomnia again when I move down to one patch again, and the final move to zero could be anything from even more severe withdrawl symptoms to no problem at all. The good news is I haven't taken any Ativan in 3 days and I haven't had any withdrawl symptoms over the last 24 hours. Hopefully it stays that way.

I did a lot of research over the weekend trying to determine what was causing the severe insomnia and the weird sensations in my forearms - sort of like insects crawling under my skin. I found that either reducing the Ativan or the pain patches could be causing my symptoms. One other thing I learned was that my appetite stimulant drug could also lead to dependency and withdrawl problems. Oh joy!

So my current drug elimination plan is to completely get off Ativan this week (which consists of monitoring for any more withdrawl symptoms and dealing with them), then go back to reducing the pain patches after the dental work is completed. Since I want my body to be as strong as possible while it heals from the tooth extraction and root canal to minimize the chance of osteoradionecrosis, I need to be getting a full night's sleep to ensure maximum healing. Once I'm off the pain medication I will try stopping the last antiemetic that I'm taking and then finally try to get off the appetite stimulant. Since I believe I'm not experiencing any side effects from the appetite stimulant, I'll go back on it if I find that dropping it adversely impacts my weight.

One thing I forgot to mention earlier is the neuropathy (numbness) that has started in my feet and index fingers. Not fun, but the literature says that the build up is gradual after chemo and it peaks somewhere between 3 to 5 months. Hopefully that means it won't get much worse and will fade away completely over time. There are many cases where it is permanent though. This disease has so many fun features. Actually it's not the disease, it's the treatment. The disease ends poorly if not stopped, though, so I'll take the side effects. I just wish they would stop piling up and go away!

Tomorrow I get my molar with the cracked root extracted. Tuesday we went to the UCSF Dental Department to get a second opinion on how and when we should proceed. They told us that the probability of getting osteoradionecrosis after the extraction was actually lower in the first 4 months after radiation therapy than after that. Evidently the radiation damage takes a while to screw up the circulatory efficiency to the teeth and jaw bone. Since it will be 4 months on August 3rd (my, how time flies when you are having fun - NOT) we have been scrambling to get things set up to do the extraction soon and to make sure that if any other teeth look ready to fail, we get those out now too.

The osteoradionecrosis has me very concerned. When I prompted the UCSF oral surgeon for some encouragment about my chances, he just told me to go check out the internet. I went into a real funk after that for a couple days. Finally when I went to my endodontist today to check out 3 other suspicious teeth I got some encouraging words. My 2 teeth that are currently sensitive to cold were judged to be OK enough to keep. One that has some sensitivity near the root was judged to need a root canal soon (which I will have done next Monday) but he also said that osteoradionecrosis isn't very common and the oral surgeon I am using is very very good. He also mentioned that the UCSF guy I talked to, the head of the department, really knows his stuff but is not a good communicator and lacks empathy. I have never before walked out of the endodontist's office after being told I need a root canal and feeling so much better than when I went in!

Also, tomorrow as part of the extraction treatment I start a powerful antibiotic to try to prevent infection of the bone that's exposed during the extraction, because infection is a primary path to osteoradionecrosis. Since it is very powerful I may have side effects from it since it can completely mess up the bacteria balance in my digestive system. There is even a (rare)possibility of very severe life-treatening colitis for up to 4 months following taking the antibiotic.
I should be getting used to having my life threatened by medical treatments that are supposed to save me by now! ;-)

At least my withdrawl symptoms pale in comparison.

Speaking of withdrawl, I went down to one pain patch today. I should know by tomorrow if I can stay there or need to go back up to two. Also I'm only taking 0.25mg of Adivan (at night) for the last 3 days and I HAVE been able to sleep. I have had bouts of depression and some throat discomfort but who knows where those are coming from.

I swear that if I ever get back to close to 100% healthy, I will never take my good health for granted again!

Another week of progress and challenges. I started back to work on Thursday, telecommuting from home. Two days of work wasn't too much of a stretch but it will be interesting to see how I handle a full week. Anyhow it felt nice to start to get hooked back into what is happening at work.

Saturday night Bonnie and I attended a neighborhood dance at our Walnut Knolls park. I really enjoyed dancing again. I think I surprised Bonnie with how many dances I had the energy for. I know I surprised myself! It was great watching Bonnie dance. She dances with such joy and exuberance and her distinctive style brings back many happy memories from the earliest days of our relationship.

I found out at the dance that one of our friends from our Knolls' neighborhood was recently told she had melanoma. I vividly remember how scary the news that I had cancer was for me, so I found a chance to talk with her and passed along some of the advice that I was given early on. It's amazing and depressing how many members this 'club' has.

I thought I only had one potentially addictive drug with withdrawl potential to deal with, but I found out it's actually two! Thursday night I couldn't get to sleep and I had the same sort of restless twitchy feelings that I had when we forgot to replace my pain patches and I started opiate withdrawl, but this time I wasn't due for patch replacement for another day. After a couple of hours I decided to take half an Ativan (one of the meds I'm still on) and about 30 minutes later I finally got to sleep.

The next day Bonnie suggested that the Ativan might have something to do with my 'withdrawl' symptoms and that reminded me that Glen had expressed his concern that I was still taking Ativan a few days earlier. I did some research on the net and found out that the Ativan that I was prescribed to help with the worst days after my treatment had the potential to cause withdrawl even while I was still taking it due to my body developing a tolerance for it. I also found out it had the potential to be very addictive and could be very challenging to quit!

It also can cause depression, and I have been struggling with depression off and on for a couple of months. I thought that being depressed wasn't too unexpected given all I was going through and the impact on my life, but when I had a bout of depression shortly after getting the good news about my PET scan, it just didn't feel right. I had been taking 0.5mg each morning and afternoon for months. I didn't really think about it. It was just part of my medication routine.

Friday night I had the same symptoms at bedtime and decided to try to not take any Ativan. Finally at 4am I gave up and took 0.5mg and got some sleep. Over the weekend I stopped taking it during the daytime without any problems and took about 0.25mg at bedtime, which has worked out OK. I can't cut back more with any accuracy since I'm using a pill cutter on 1mg pills. I emailed one of my doctors over the weekend to inquire about following the treatment I found on the web developed by a British doc, where Valium slowly replaces the Ativan and then the Valium is cut back slowly to zero. I hope to hear back from her tomorrow.

All in all, I felt better this week than last. And I haven't been depressed since I read that the Ativan is probably the cause. So although I keep getting surprised by new challenges, I do feel I am making progress. Now, if I could just regain the ability to eat spicy food!

A lot has happened in our lives since our last update 2 weeks ago. We took Lauren to Eugene, Oregon for her introDucktion to U of Oregon. Bonnie decided that we would take a few extra days to explore Oregon a bit. We spent 2 days in Medford exploring Ashland and Jacksonville. In Ashland they have a summer-long Shakespeare festival and we attended a very nice performance of Macbeth and wandered around town. In Jacksonville, they have an historic downtown with a number of very old (for this part of the US) buildings. In Eugene we attended 2 days of orientation for parents, while Lauren attended orientation for incoming students. All of us left feeling very positive about her college choice.

This was my first time away from home for a multi-day period so I was concerned about meals given my limited diet. Everything worked out fine except Bonnie and I both forgot to replace my pain-killing patches on time and I started going into opiate withdrawal which was not fun at all and kept me awake until 3 am one night in Eugene.

Dashiell and I both got some good news last week. Dash was told that his broken toe was healed so he could remove the boot he’s been wearing for nearly a month and return to normal play, so he will be able to go to camp mid July through mid August. I got a good report from my PET scan. That doesn’t mean I’m cancer free yet. That will take 5 years of clean scans. The latest scan means that the tumors they saw in December are gone now. This is the best possible news for now, so that’s good!

We have been steadily dropping the pain-killer dosage. We were at 86 a few weeks ago and today we went to 24. We’ll see soon if we can try even lower or if we need to go back up to 36 for a while. I’m still taking 5 other meds and I don’t plan to drop any of them soon but someday I’ll be med free!

Later this week I start work again, albeit telecommuting from home. I expect it to be a stretch at first but I’m anxious to get back to work.

I want to thank everyone for their comments. This blog has been a great idea to record how Bonnie and I are feeling at the time and to communicate with others. It was amazing to hear from Nancy, a dear friend from Grad School days that I had lost touch with 30 years ago. Nancy, thanks for your words of encouragement. I hope that your life has been as rich as you deserve!

Todd is doing much better these days. One of the lowest points for me was about 2-1/2 weeks ago when Todd was feeling very poorly and very needy (SO, so unlike him!) and I just didn't know what else I could do to help him. I felt I had done everything I possibly could, and just didn't have a lot more to give at that point. Luckily a dear friend came over the next day and talked to us about his similarly "down" experience a few months after treatment. It made a big difference, hearing what he had gone through, and what had frustrated him, and what he did to get through it.

I think that discussion and a little more healing time, combined with the family needing Todd to be "Dad in charge" when Dash broke his toe and Carolyn needed major "only dad can do this" help with her delayed flight and lost luggage, has helped Todd really start to regain his place in the family. He is, of course, still physically fragile due to all the weight he has lost and some of the meds he is still on, but this latest "bump up" in his recovery is most welcome.

In addition, he has given up on drinking those bottles of Ensure, and is eating more "normal" food. Just this week I FINALLY felt that he had three reasonable meals on the same day. Although not large portions by any means, it was a nice variety. For dinner I made him bay scallops, sauteed with tiny shards of fresh crookneck squash from our garden, and peeled plums (the peel is too bitter for him) with white nectarines. Such a relief from all the weird baby foods that were neither appetizing nor that nourishing! Lunch is often a quesadilla with cheese, chicken and corn. French toast with maple syrup is often the breakfast of choice, as it stays warm long enough for Todd to finish it. Eggs get cold too quickly, as he eats slower than his normal slow.

He is more open to trying a bite of something now, which is great. Today we shared a hot fudge sundae; he said it wasn't as tasty as it should be. (Hot fudge, how can that be??) So some things don't taste as good right now, some are still too difficult or dry or spicy to eat (nothing with black pepper, no citrus or tomatoes, for instance). But the list of edibles is growing, which makes it easier for me to come up with appetizing choices. This week the plums on our tree are ripe, so we we are enjoying them with almost every meal. In the next few weeks we will have white nectarines and apricots.

Tuesday was our 20th wedding anniversary, and we actually went out for dinner for the first time since Valentine's Day, before treatment started. Dash and Lauren came with us, also our neighbors Vince and Mary. We went to the little sushi place down the hill from us. Todd and Mary had tempura, the rest of us ordered unagi, tobiko, spider roll (with soft shelled crab), california roll with scallops and a few other things the sushi chef recommended. I brought a framed photo from our wedding day to decorate the table. We had such a nice time! We've had a lot of fancier dinners for our anniversary, but this was one we will always remember.

Sorry we haven’t blogged recently. There hasn’t been too much new to report on the cancer side, while the home life has been absolutely crazy.

I made it through both graduations, though I was really tired afterwards and I had to leave each shortly after it ended because I was freezing, even though I dressed like I was in Tahoe in January! Just don’t have any insulation left and the thermostat is still busted. Dashiell’s 8th grade graduation was pretty low key emotionally, as expected. The high school graduation was a different story. As expected, seeing my little girl take one more step toward the edge of the nest was intense. We are so proud of the fine young lady she’s become, but it is bittersweet.

The following week was I was apprehensive about attending the customer mtg in San Ramon due to my lack of physical stamina, but the mtg went really well. I was able to stay through lunch and my condition never limited my participation. It was the best morning I’ve had in months, since I was so preoccupied with the mtg that I went for long stretches of time without thinking about the big C. Kevin invited me to the dinner that evening and although I was concerned about eating in public due to my limited diet, low appetite and really slow eating speed (yes, even slower than normal for me!) I decided, what the heck, I’ll go for it.

One of the reasons I wanted to attend the mtg and dinner was it would be the last mtg for Vince C. and Dick V., who are both retiring in the next few months. They have both been great to work with but more importantly, they are also my friends. So I went home for a nap and later drove off to the restaurant. Yes, that is something new -- I am driving again. I’m still on enough pain killers to knock out a horse but I finally convinced Bonnie that they don’t really limit my coordination. Also, it’s not like I still drive a hot little sports car (ye olde Camry is 16 now). Well, dinner went great too, although toasting with a glass of milk while everyone else was drinking some nice red wine wasn’t much fun. It did get some laughs though! I managed to find courses that I could handle although it was a bit depressing to have my choices limited that way. There were a bunch of dishes that tempted me but I knew I wouldn’t be able to eat them. As expected, I paid for such a busy day. My stamina was much lower and I felt a bit more fragile over the next couple days. But, it was worth it!

Last Saturday there was a picnic down at the park for our neighborhood's 13 graduating 8th graders. Dash stayed to play soccer while the rest of us came home. Later, he limped in the house with a swollen, bloody big toe and asked me if his messed up toe (from slide tackling someone bare-footed) would keep him from attending camp the following week. He was planning to attend camp in Minnesota for the next 4 weeks. It is a camp that some friends have attended and highly recommend. I took him in for x-rays the next day and they confirmed his toe was broken. Not only that but the doctor thought it would probably need a pin but he said the podiatrist would make the final decision on the treatment. We couldn’t get an appt. until Wednesday so we cancelled his flights and camp. He was pretty bummed. We did get some good news on Wednesday: no need for a pin (just a big boot) and he will probably be healed enough to attend the mid July camp.

Today Carolyn left for 3 weeks as an au pair for a friend in France. Unfortunately, she had some bad luck too. Thunderstorms in Chicago delayed her departure from SFO long enough that she missed her connection in Chicago and they diverted to Minneapolis to refuel and let the storms clear Chicago. So she arrived over 5 hours late and was in a mile-long line waiting to get rebooked as I write this. Luckily I called hours ago and got her rebooked on an Air France flight tomorrow evening but she needed to wait in line to get the paperwork. It helps that her aunt lives 45 minutes from O’Hare so she can stay with them tonight and tomorrow. Her aunt and uncle and cousin Max spent hours waiting for her--they all finally left the airport at 2:00 a.m. What a long day for everyone!

I’ve got an appointment next week with Bonnie’s oral surgeon for consultation on the cracked molar. The uncertainty and potential severity of removing the tooth has been weighing on my mind. It even overshadows the cancer prognosis which seems strange when I think about it. Perhaps it means that I’m more optimistic about the cancer than I thought, although the worst case scenario with the tooth is loss of my jaw bone, so it’s all relative.

I was supposed to see my ENT surgeon next week also but he cancelled due to a need to operate on someone. My check-up needs to be rescheduled, but he has no slots available for the next 2 weeks.

The good news is my diet continues to widen and I can now maintain my weight without drinking any Ensures. That is really nice. I still should drink 1 or 2 a day to regain some weight and I will later but for now I’m enjoying not having them. Maybe not… GOD, how I hate Ensure now!

It's always something!

Well, the ups and downs continue. Dr. Fong looked at my MRI from May 29th and said, “Looks pretty good, especially for only 7-8 weeks out. The tonsil and the lymph nodes have dramatically reduced in size.”

Next I expect to hear back from Dr. Yom and the UCSF Tumor Board, but due to bureaucratic delays in getting the info to them that won’t be until next Wednesday at the earliest. After that I get a PET CT done at 12 weeks out and we will get a new number. Numbers greater than 90% are welcome, greater than 95% especially so. :)

My dentist gave me glowing reviews on the job I’ve done on my dental hygiene but found a dip pit between the gum and tooth at one corner of a tooth that had a root canal last May. This usually means a cracked root and replacement with an implant. Since any extractions expose me to severe bone infections due to the intense radiation that bone has already suffered, an implant is not an attractive option. (Per Dr. Yom: absolutely NO EXTRACTIONS.) We may end up leaving the injured tooth in place and fighting the inevitable bacteria infections with antibiotics for the rest of my life. Not what a person who is looking forward to getting off all of these meds wants to hear.

With Bonnie’s encouragement and help I’ve added more non-liquid foods to my diet. That’s a nice plus and it lets me keep an eye on the status of my taste buds. So far, taste is starting to return except for sweet.

This coming week I need to build up my stamina since I have back-to-back graduations to attend June 11 & 12. That will be a dry run for me to help decide how much of a customer meeting I can attend the following week in San Ramon.

Updates from BB and TB

Sorry we haven't blogged much lately. I keep thinking, hoping we are back to "normal" and of course we are not. Todd is still recovering from treatment and will be for a while. Meanwhile, life rolls on -- Dash is graduating from 8th grade and Lauren from high school in the next few weeks. They are busy with end-of-year projects, finals, and in the case of Dash and Carolyn, getting ready for their summer trips. Carolyn is taking her last driving sessions, hoping to get her license in July. Lauren has been working after school and getting ready to flee the nest. I fear summer will just fly by -- our last summer with the three kids still at home!

We were recalling that last year at this time we were getting ready for our big trip to Europe with the kids. I was apprehensive about traveling with 3 sometimes crankypants teenagers for 3 weeks, but we really did have a great time, and we all have lots of nice memories of the trip. I remember how carefree we were then -- nothing but blue skies! I tell you friends, take those trips, don't put off those things that make you happy, as those memories will help sustain you through the crazy times!

Todd's sister Penny (from PA) and her children Heather and Chad came to visit us last weekend. Heather is now 27, Chad 24, and our kids adore them both (and also Heather's boyfriend, who was unable to make this trip). I snuck away to drive up to Napa with them one of the days, and we had a great time. They came to our 59th Annual Memorial Day neighborhood picnic. The weather was a little frigid by dinnertime, but they were good sports! It was a really nice visit. Last year his sister Amy and her family came from Boston for a visit just before we left for Europe.

One day last week I drove Todd to Richmond (Chevron) to get his laptop fixed. The tech team quickly dealt with it while he waited. He had a short meeting with his boss, Kevin, while he was there. I'm sure Kevin was shocked to see him. Guys, I'm doing my best to get him better!! I know Todd will be happy for this to be over and be back at work, because he really likes his job and the people he works with. As it was, he slept in the car on the way there, and most of the way back. It doesn't take much to tire him out, unfortunately, but give him some time!

TODD REPORTS:
We met with the UCSF doctors on Tuesday for a check-up. If feels like months since the treatment ended. I still have bouts of nausea, constipation, thrush and throat pain, but overall I feel better than those first couple of weeks after treatment. (Bonnie's note: he was so drugged up then that he doesn't really remember how nasty it was, thank goodness!) Life would just be a whole lot nicer if those other symptoms would disappear. I've been told that it happens, but very slowly.

The highlights of the visits were the comments from the oncologists. Dr. Dubey, the medical oncologist, said she couldn't find the secondary lymph node site. Dr Yom, the radiation oncologist, who is usually conservative in outlook, was saying things like "excellent" and "95% sure that the cancer is gone." Despite the pain and hassle associated with the onging symptoms, this was pretty heady stuff to digest.

I had an MRI on Friday afternoon, which should give us some numbers on the primary site, if there isn't too much inflammation still visible. The results will go before the UCSF tumor board on Wednesday (if all goes well), and Dr. Yom will call me with their findings later this week. In July I have a PET scan scheduled to take a close look at the lymph node. Those two scans should give us more info on the prognosis. Realistically, I can't get a clean bill of health for 5 years yet. I just get examined closely and frequently every 3 months, then 6 months, then yearly for the next 5 years...looking for bad news and hoping for none.

Still, the "95%" number is cause for celebration. My friend Glen who is 5-6 months ahead of me and doing really well, was given a "70%" by Dr. Yom at this stage, so I am blessed so far! Thanks for all your support!

This is the start of Todd's 7th week post-treatment. It goes by so fast, yet things change so slowly. But there is good news this week! Todd started the week off still not eating enough, and vomiting once a day, which made things even worse. We were both pretty down because of that. Joyce and Glen came for a visit and cheered us up. Glen had mentioned using an appetite stimulant to good effect and so we talked to Dr. Liu about trying one. It has made all the difference!

The one he is using not only stimulates his appetite, but helps control the vomiting and also helps a little with the pain. Because his throat is hurting less, he is actually eating a little solid food. Since last night he has had tiny bay scallops, most of a poached egg, three tortellinis, a spoonful of mac and cheese, a little ice cream, a few bits of chicken and pork. Ensure Plus, Jello and cling peaches are still on the menu, but it is wonderful to have it expand! The next big (huge!) step will be when he can eat solid food without the help of drugs, but for now we will take this interim step.

Todd is still pretty fragile. He pulled a muscle reaching behind himself to pick up a pillow(!)--and it hurts whenever he revisits that movement. He has lost a lot of muscle mass. Today we bought new jeans size 32 (he normally wears a 34), as his regular ones were just getting way too baggy. They are still a loose fit in the leg. We also got him a summer hat so he can avoid the sun on his face and neck. I took him for a haircut and she did a nice job of camoflaging the sparse spots on the back of his head. We went for a walk around the block tonight once it cooled down from the 97 degree heat we had today.

Todd's sister Penny will visit us over the holiday weekend with her two grown children. We are looking forward to seeing them. Chad has visited us a few times, as he is living in Alameda and working with an engineering firm on the Bay Bridge. We haven't seen his sister Heather or mom for a while. It should be a nice visit!

It's great that the week is ending on such a high note, as the first part of it was definitely depressing! Thank you all for your good thoughts and comments and cards. They really keep us focused on the positive.

x

Mother's Day 2009

I had a lovely Mother's Day. Todd and Carolyn snuck out to go shopping yesterday under the guise of her getting some driving practice. He got me a beautiful "mushy" card and two really pretty necklaces.

Todd and I were up well before the kids this morning, so we went out and sat in my garden. Daisies, orange California poppies and roses are all in bloom! The kids eventually joined us in their pjs. Lauren made me a card in the cut-out shape of the word "MOM", painted in green and blues with tiny pink waterlilies -- Monet inspired! She is so creative. She made Todd a birthday card this year that looks like a little box. When you slide off the ribbon bow, the box opens to 5 little Brookhart people - each with a photo head! She also gave me some flowering plants for the garden and she and Dash each got me a glass "mushroom" garden ornament. One is orange with yellow swirls, the other is irridescent green. Dash made a card all in Spanish! We all look forward to his special cards, as he has an offbeat sense of humor. Carolyn said her gift was still being worked on. She likes to do hers after-the-fact. She will surprise me with her creativity! She did let me hug and kiss her several times today, which is a lovely treat. The kids washed my car, had a squirt gun fight and then I helped the girls clean out the garage a little (mostly Lauren's doing). Carolyn helped me hang the hammock in a secret place amongst our redwoods. Dash played "Blackbird" on the guitar for me as a final treat.

I didn't want to go out for dinner, as Todd is not up for that. I thought about taking everyone to see Star Trek, but nixed that idea for the same reason. I didn't want to leave him home. He is still only eating jello, besides the Ensures, and being out yesterday for that bit exhausted him for the rest of the day. So the kids and I piled into my clean white car and we went to In-N-Out for burgers! Fabulous! We went through the drive-through! We brought Todd a vanilla milkshake, but he wasn't up for more than a few sips.

Both today and yesterday Todd had good days, but then vomited in the evening. I have emailed his doctor to see if she has any ideas why, and I will try to get him IV fluids tomorrow to make up for what he's lost. He is now entering his 6th week post-treatment. Doctors have said that people often see some good improvements 6-8 weeks after treatment, so I am hoping that will be Todd's experience as well. His throat is still so sore. We are very careful now to renew the pain patches a bit early to avoid more unnecessary pain.

We just so want this to be OVER! It is amazingly depressing how debilitating the cancer treatment is. People told us over and over how slow the recovery would be, but I guess it is human nature to believe that your experience will be better, just through sheer force of will.
You slog through the treatment phase, counting down the days until you are done. But you are NO WAY near done! These 5 weeks post-treatment have really gone by quickly, and Todd has markedly improved his quality of life, but he still can't eat, and who knows when that will happen. Ah well, onward we forge...we will not give up...

Improvements we've seen:
He's on fewer drugs = he's more himself.
His voice is back.
He has a little bit more energy each week.
He can eat jello, canned peaches (cold and slippery works best)
He can taste some things (but can't taste sugar)
He is sleeping better (and can sleep on 1-2 pillows, instead of sleeping sitting up).
Issues with night phlem are maybe 1x, not 10x (which means I am sleeping better, as well)
Dr. Yom said his salivary function was better than she expected at this time.
His ability to concentrate has increased a little bit each week.
He is ocassionally grumpy, an emotion he was too out of it to express earlier. (My grandma always said, "When they're a little crabby, you know they're starting to feel a little better!")
He is taking a little more interest in the world around him.

I always feel better when I do my list, whether it is like the one above, or my list of people like you who have kept us close. When I have trouble falling asleep, I think "I am grateful, I am so grateful..." and I always fall asleep before I finish my list of things or people I am grateful for. Good night!

Todd blogs again!

Sometimes is it one step forward and two steps back. This past weekend I had 2 rough days back-to-back. We tried reducing my last antiemetic drug to 2 doses per day instead of 3. That didn’t work out too well so I’m back at 3 a day. The good news is that this antiemetic doesn’t have any noticeable side effects. The pain spiked, a new thrush infection started, my ensure and water intake dropped and I felt crummy. How many times have I read and repeated here that improvements occur week to week (or more realistically fortnight to fortnight) but I think it’s human nature to look for changes day to day especially when I don’t really have anything else to focus on. Two back to back rough days really set me up for being depressed. Bonnie does a great job of not allowing me to think that way. So we reviewed all the improvements I’ve experienced over the last 4 weeks. That helped get me into the right mental state.

So far this week is going pretty well except for the thrush. The heavy phlegm problem seems to have gone away so I can sleep only slightly elevated now and only wake up to clear the phlegm 2-3 times a night. We succeeded in reducing my pain killer dosage so I’m not sleepy all the time. I tried a number on new foods, some of them worked (canned peaches) and some didn’t (peeled strawberries—the seeds are too rough‑-caused me to throw up for some strange reason) but I still can’t eat enough of any real food to reduce the number of Ensures I need to drink every day @ 350 calories a pop. Man, I am getting sick of Ensure but I’m probably months away from getting off them.

Glen returned from his Scotland trip and stopped over last night for a visit. Talking with him really helps me in so many ways. Later last night Neil came over to watch the Arsenal Champions League match and Vince dropped by and watched the 2nd half with us. Unfortunately Arsenal lost but it was nice have the two of them over. I didn’t have to talk as much since they carried most of the conversation workload which saved wear and tear on my throat.

The other change for the worse this week is Bonnie has gone back to work half time so I don’t have my sweetie with me 24/7 anymore. ;-)

It's hard to believe that 4 weeks ago Todd had his last double radiation treatment. As he says in his entry (below), it is slow going, but he is moving along!
This weekend we will attempt to get Todd off one more drug . He would then only be on the pain patches and some mild anti-constipation meds. At the pharmacy today, I noticed the clerk had printed out Todd's prescription history since December. I counted them (many were refills): a whopping 49! No wonder I feel like I am there all the time--I have been!
We have cut the IV fluids down to just 1X this week, and will do that (or none) next week, depending upon how much fluid he downs on his own.
We will try some soft foods for Todd this weekend: more jello flavors, puddings, mashed sweet potatoes, maybe canned peaches, so he gets practice using those swallowing muscles and sees what flavors he can taste. It's interesting reading some of the cancer blogs -- to some people everything tastes salty, to others it tastes metallic, to others still, everything tastes like cardboard. The same with the recovery time -- it's all across the board.
Todd is still cold a lot of the time, due to all the weight he has lost. (He seems to be down to a stable 158 this last 1-1/2 weeks). Even in the house he often wears a coat. He looks pretty cute in that leather cowboy hat he bought years ago in Australia! He is looking better over all. It will just take time to get his energy up, his food intake, his swallowing and talking--but it will come!
.

4 weeks Post-treatment

Two steps forward and one step back – That seems to describe my current state. We met with Dr. Yom at UCSF yesterday. She wasn’t quite as pleased with my current state as Dr. Fong was earlier in the week. The good news: she couldn’t see or feel any tumor at the primary site but her vigorous massaging of my toasted tonsil sure did make my eyes water. Whew! The not as good news: she said the secondary site at the lymph node was still working things out. She is satisfied with the progress there but she’s not ready to give me a clean bill of health yet either. The good side of this is when Dr. Yom does say there’s no sign of cancer it will be with a great deal of credibility.

Wednesday evening my throat pain jumped up suddenly and stayed there long enough that I had Bonnie increase my opiate dosage so I could eat without too much pain. I told Dr. Yom that it was like some one peeled off an old patch of flesh and exposed the new but raw flesh underneath. She thought that may have been exactly what happened. The bad news is that now my constipation should get even worse, I’ll spare you the details on this side effect but it is not trivial. Also the higher dose makes me sleepy so we will be looking to reduce the dose again as soon as we can. No one knows when the throat pain will go away and the guesses are widely spread out (2 weeks – 7 months). Depressing.

Right now cherry jello is one of the highlights of my day. Amazing, but after weeks of eating (drinking) the same thing 5-6 times a day, that cherry jello sure hits the spot. It also represents the promise of other flavors reentering my diet sometime soon. We are making a list of other foods I could try this weekend (pudding, mashed sweet potatoes, applesauce).

The night time phlegm problem continues to worsen. I probably woke up 20 times last night to hack up some really gross ‘loogies’. The only good news is that Bonnie’s count is always less that half so she is sleeping through most of my attempts to clear. This is happening despite sleeping almost sitting up completely. The downsides are lack of sleep, especially REM sleep, and a sore throat from all the effort all night.

On the bright side I haven’t had any vomiting attacks recently so we are going to reduce my anti-emetic med today. That will be nice if it works but reducing the pain killers would be nicer.

An additional note to Monday’s blog – While we were waiting to see Dr. Fong, a blonde lady and her husband walked out and I thought to myself, she looks a lot like Diane F! Diane also had tonsil cancer with lymph node involvement and finished her treatment in late October. Glen knew her and put me in touch with Diane so I had one more person to get coaching and support from. She has a blog with a number of her photos on it so that’s how I recognized her. I ran after them and caught them just before the elevator came. It was really nice to finally meet one of my most significant supporters and to be able to give her a hug and thank her. Thanks again Diane. I’m sure I’ll be calling you again soon.

Todd's first blog post-treatment!

I'M BACK. I finally have recovered enough to help Bonnie out with the blog updates. Man, the last few weeks were indeed a journey through hell. Bonnie tells me some detail from the last week of treatment or the first 2 weeks after treatment and I can’t recall any of it. There are massive chunks of those 3 weeks that are just holes in my life. The recovery so far has been pretty much as advertised in that I can’t look for day-to-day improvements. The recovery process is too slow for that. We look at things now week to week.

We did get some good news today at my 1st post-treatment appointment with Dr. Fong at Kaiser. We set up my monitoring schedule for the next few months. He finished with a detailed exam: my neck from the outside, inside of my mouth & throat, and inside again with the camera down the nose. He said he saw and felt no evidence of cancer. He also said that my quick early response to radiation was a very good sign. The next milestones are an MRI to be done at the end of May and a PET scan at 12 weeks.

Although I’m still living on Ensure shakes, my weight seems to have stabilized. I have lost 24 lbs that includes a fair amount of muscle. I have almost no endurance and I get cold very easily. Now my focus is eating enough Ensures a day (6 is the target), staying hydrated (drinking 1-2 liters), getting an appropriate amount of exercise and keeping a positive outlook. Bonnie has been the key to everything. I couldn’t have survived this without her. Yesterday she mounted all of the cards from you folks on the fireplace mantel and told me that I have all these folks and more out there rooting for my recovery. I have to admit it did feel good. So thanks to all of you who have sent cards or flowers or responded to the blog. I’ve managed to read them all and they do help.

This week is better than last week but life is still far from normal. Last night we got distracted and forgot that my opiate patches needed to be replaced. At about 8pm my throat started hurting much more than normal. It hurt so much that continuing to drink was out of the question. I just curled up in a ball and waited for the new patches to take effect.

Dr. Fong suggested that I try eating some soft foods to keep all my swallowing mechanisms working, so I just had my first non-liquid food in weeks, some cherry jello. Progress is so slow that it’s tough to keep a positive outlook consistently. Patience has never been my strong suit.

Two steps forward, one step back

Two positives: yesterday Dr. Liu cancelled one of Todd's three weekly IV fluid infusions, as she said his creatinine level was good. We will see what that means for next week. And, he actually was feeling hungry!

Unfortunately he came down with thrush last night, which made it more difficult to swallow. He stopped at 4 Ensures (he had 5 the day before). I visited my friendly Kaiser pharmacy for the meds this morning after I dropped off the boy carpool and delivered something to Carolyn at Las Lomas. Luckily the high school is just across the street from the hospital.
Hopefully the thrush will respond quickly to treatment as he doesn't need anything else to make his mouth sore. He had a rough night last night, with a lot of coughing and night noises that kept me up for parts as well. We will both need a nap today before the kids bring all their energy home. I'm dragging!

Starting Week 3 Post-Treatment

Sunday, April 19th
Todd is doing very well today, thank you! When I woke this morning at about 8:30, he was already up and had a list of things he wanted to get done today (if that's not Todd!). He spent a few minutes trying to figure out why our cordless phone system is not working, and then we went out to check the irrigation system, truly the job I despise most in the universe!

The entire yard, front and back, is overgrown, as I haven't done my (gradual) spring pruning, which I normally start in February. So it means climbing between, around and under overgrown plants and bushes, trying to find the irrigation heads to check that all the tiny hoses are still connected. Often if I run a section of the system I can hear the hissing of the water where a hose has become disconnected, but that's not always the case. It's dirty, dusty, allergy-inducing work and my nose is usually raw by the time I finish a section. I chopped as I went, just to cut through the underbrush, and Todd turned the system on and off for me and help load the green bin. I later found him on the back stoop with our dear neighbor Vince, who has just cut down a small tree for us in the backyard. Vince was sitting in the shade, chainsaw at his feet, having a beer and Todd was sitting there next to him, drinking an Ensure! -- a scene that just warmed my heart!!

As he still isn't getting the number of calories he needs, I need to be careful that he only burns them on internal healing, as much as he might want to do other things. He does get tired pretty quickly. But it is good that he is thinking outside of himself! I am so utterly thankful that he is getting better. I simply can't imagine life without him, as he completes my world.

I am so thankful, as is Todd, for all your prayers and positive thoughts, and cards and flowers and fruit and food and driving and emails and everything you have done for us. Every single thing has made a difference!

Getting stronger every day...slowly

Sorry I haven't updated you in a while. The first week after treatment was harsh. Todd's voice was rough and raspy, he was very fatigued and it was very hard for him to keep anything down that he drank (he was on liquids only). As a result, he was very discouraged, and because of that I decided I would take some time off work to support him and his recovery. It wasn't going to be good for him to be home alone all day (during his treatment weeks he spend large chunks of the day going to and from UCSF), and trying to work and take care of him and the kids was going to be way too much.

Monday, April 13 was going to be my last day for the month but I couldn't even make it to the office during the day as Todd needed me here. And when the kids came home from school, they needed attention as well (they've been getting so little), so I waited until 9:30 pm when they were nearly in bed to drive the ten minutes to work. It was blessedly quiet (except for the short time the cleaning guy came in to vacuum), and I read and sent a pile of emails, updated all my PSAT files, finished off designing the summer mailer, and several other items. I finally left the office at 6:06 am, feeling a weight gone off my shoulders! When I got home, I was still wide awake, so I made the kid's lunches and got them up at 7 a.m. Suddenly I started feeling sooo tired. I called Christine to switch carpool mornings so I wouldn't have to drive Dash and the boys at 8:00 a.m., and fell into bed next to Todd. I slept until 11:00. I made it through the rest of the day pretty well!

We are now in the 2nd week post-treatment. Everyone has said that the first 2 - 3 weeks after treatment are rough, and so far that has been the case. However, I am already seeing some improvements. Just last night I realized that Todd had his Todd voice back! It still gets raspy when he talks too much, but for the most part he sounds like his old self, a wonderful thing! His neck looks great; it is still pink, as if from a sunburn, but all the dry skin and scabbyness is gone. Since we dropped two of his meds this last weekend, he is much more alert, much more "himself." And although his throat is sore, and gets worse the more he irritates it by drinking his Ensure or Instant Breakfast, he does not have the nasty raw mouth sores the doctors were expecting as a result of the radiation.

On the down side, he is very restless (he definitely has a case of "happy feet") and it is still a major chore for him to get enough calories. He is down to 162 lbs from his regular weight of 182-184 and his pretreatment "cheesecake" weight of 192. He has lost a lot of muscle and definitely has well-defined cheekbones. We are hoping that in the next few weeks as his throat slowly heals, we can get more calories into him. He has tried baby foods, carrot soup, yogurt, sweet potatoes, pasta with cream of chicken soup, mashed avocado, ice cream. Right now he has decided to stick with the liquid diet as it has the most calories for the work involved it getting it down.

Are we done yet? No...

Friday night Tracy M came to congratulate Todd on finishing his treatment. She brought dinner and a bouquet of balloons and sat and chatted with us and the girls. She had gone through this with her husband Tom a few years ago. It was a nice visit, and Todd was in good spirits. I was surprised he stayed up as long as he did. It's great that in spite of all the craziness and in spite of how nasty he feels, he usually shows us his sense of humor. How could we not keep him?

On Saturday and Sunday he had IV fluids at Kaiser. Lauren took him on Saturday and stayed there the 4 hours with him; she did her homework on her laptop while he dozed on and off during the IV. Sunday morning I dropped him off and she picked him up.

For various reasons (some unknown!) he is still not doing well nutrition-wise. He should ideally be drinking close to 6-7 bottles of Ensure daily, and lately he's been doing 2 or 2.5. Today he had 2 plus a banana. If he drinks it too fast or tries to drink too much, it all comes back up, so he can't be rushed (I know, I have tried!). We just have to take it easy these next few weeks until things gradually improve.

I understand he won't be gaining any weight for several months, as he has so much to rebuild internally. I'm looking forward to the day he gets his butt back, as it has all but disappeared! He was 171 lbs today, only because he's had 2 days of fluids.

Glen came for a visit this afternoon. Glen and Joyce have been helpful beyond words! They have been our guides on this crazy journey, as Glen went through this madness just last year. He and Todd sat and talked, then they came out to where I was pruning the wild things back: an out of control climbing rose and a honeysuckle vine, both entangled in 2 trees. We sat in the shade and talked for a while, then Todd started tossing his cookies, so Glen made exit (he'll be back!).

Debra A. brought us some leftovers from the Gourmet Group dinner we missed this weekend at the Sankey's. The kids and I enjoyed the jambalaya, scallops and sausage, salad and bread pudding, plus the first watermelon of the year. Reminds me that I have bowls, a pot and several cookie sheets to return to folks. Must do that this week!

Tomorrow we have two doctors' appointments. I want to get the specifics on when and how to wind down the anti-nausea drugs and pain patches (I know it's not for at least a couple of weeks or more), and also find out when the follow-up CT or MRI scans will be scheduled in May. I consider them the definitive word on how the treatment went.

Thanks for those sweet comments! You all brighten our days and we are thankful you are part of our lives.

Last Treatment Day

We found out today that tomorrow (Friday, April 3) is Todd's last day of treatment. Dr Yom decided today (Thursday) that she didn't want him to come on Monday; instead she wants him to have a good double-zap of radiation to end it.

I was counting down the days, and all of a sudden here it is! It is such a relief for me, I can only imagine how it will feel for Todd. Right now I think he is too fatigued to feel much of anything. (Tomorrow will be draining for him as well, as he has the 8:00 radiation/nutritionist and then back to the city for the 2:45 radiation/Dr. Yom appointment). Monday will also still be busy: I will try and arrange IV fluids at Kaiser for Monday a.m. as we have an afternoon appointment at UCSF to see Dr. Dubey, and another with Dr. Liu back at Kaiser (which luckily is only 5 minutes from our house).

But we are officially entering the next phase: HEALING. With no more treatments zapping him, he will gradually regain his strength and get off the meds. He will have IV fluids at Kaiser three times a week for at least the next couple of weeks, and then hopefully he will be drinking enough water on his own. We will see how it goes, as his throat is very sore now and it is taking a long time for him to down 8 oz because he is so, so tired (he falls asleep sitting up), and he can only take a small sip at a time. The mucus is very thick now, and his voice has completely changed. It is lower and quieter. His is face is much thinner, as is the rest of him. The other day I thought to myself, "Now I know how my husband will look when he is 80 years old!" (I guess I'll be keeping him! :) Dr. Yom said today, "You look beat up, like you've been through the war. " It's been a long, grueling time since that diagnosis in early December, but Spring makes everything seem possible, doesn't it?

The kids seem to be doing well. They came with us to UCSF today as they are on Spring Break this week. They met Dr. Yom and took photos for Lauren's senior project on cancer (her idea). The 8 of us crowded into the tiny exam room (5 of us, plus the doctor, nurse and trial coordinator!). Everyone was being a good sport about it, and it made me see my kids for a quick minute through the eyes of a stranger. How alive and vibrant they are! How did they get to be 14, 16 and 18 so quickly? They used to be constantly on my mind, and with Todd's cancer always to the fore these past several months, I found myself ocassionally thinking, "Oh yeah, the kids!" when many hours had gone by without even a random thought about them!

It is such a joy to see them hanging out together and having fun as siblings (I know it doesn't last long, but it is nice to know that it does happen!). Lauren has taken them shopping and out for food occasionally.Tomorrow she is driving them to Stinson Beach, as what is spring break without the beach. I want them just to have a great time and come back safe and sound.

Thank you all again for the meals and help driving, and positive thoughts and prayers, and text messages, cards and flowers. We have been blessed by your many kindnesses! I will keep up the blog, as Todd has quite a ways to go before he is himself again. I will do everything I can to get him back there!

I love the weekend

The weekends are such a relief...no trips to the city. Instead I zoomed over to Ace Hardware at 7 a.m. today to buy Todd a garden sprayer. In talking to Diane last night about Todd's difficulty eating, she told me how she had used a garden sprayer to spray the back of her her throat for a good 10 minutes to thin out the mucus before drinking the Ensure. It was a great idea, as Todd has had 3 bottles of Ensure today (over 1,000 calories). This is a nice breakthrough--bless you, Diane! Between that and the IV fluids yesterday and today, Todd is feeling much better. He's even regained his sense of humor. Boy, this is such a relief!

He doesn't want to do the feeding tube, so we will see how the next few days go. If he can keep the calories up, I think he will do fine. Lauren and I went to Costco for a case of Ensure today. Thank you all for your comments.

How low can he go?

I picked Todd up at noon today for his 1:00pm radiation appointment so he and I could meet with his oncologist. (Thanks to Glen, Beth and Roni for driving earlier this week -- it was a relief to be back at work for three days in a row!).

Dr. Yom decided today that Todd needs a feeding tube. They calculate his weight at 172, down from about 193 when treatment started (10 lbs of that was from the cheesecake-and-pie binge to fatten him up before the rigors began). In his "birthday suit" he is probably 168 or 169. In the past week, the most he's gotten down in a day is a can of the fortified instant breakfast and a few spoons of applesauce, maybe 300 calories if he's lucky. I am hoping the feeding tube will help us get enough nutrition in him to help with the fatigue. He currently does not have a big problem swallowing, it's that the thick mucus triggers the gag reflex which causes him to vomit. So he drinks and eats just a tiny bit at a time, rests, and eats or drinks a tiny bit more, and the amount he consumes over the course of a day is just not enough. If he tries to increase the rate or the amount, it all comes back up.

Dr Yom wants him to have the tube for 2 months only. He will continue to go for IV fluids tomorrow (Friday), Saturday, Monday and Wednesday. We hope to get the tube in early next week; it has to be scheduled at Kaiser around his 1:00 radiation appointment at UCSF. We will see how it goes.

We left UCSF at 3pm, and then drove back to WC Kaiser for his IV hydration. I met with the oncologist there to discuss the feeding tube with her, got more hydration scheduled, got 2 prescriptions from the pharmacy, and sat with Todd in the infusion lab until he finished with his fluid infusion. We finally got home at 6 pm. (Luckily we're only 5 minutes from the hospital). He slept for half an hour and I woke him up to take some meds and he ate a few spoonfuls of vanilla pudding before going back to sleep. Jim and Kristie brought dinner (thank you, thank you!) and stayed for a glass of wine (on Kristie's recommendation I will try a glass of wine more often). The kids and I had dinner together.

Over the weekend will try and talk to Diane and Tom, two cancer survivors who have experience with a feeding tube. Meanwhile, it's bedtime. We have to be on the road to UCSF by 6:45 am for the early radiation and nutritionist appointments tomorrow. Vince has the afternoon trek back to UCSF so I can go in to work for a while. Good night!

Wednesday, March 25

Another day...I got Todd to sit out in the garden with me for a little while today. All the tulips are in bloom: intense pink, red, orange, yellow and a deep dark purple, the color of a grape popsicle. Our neighbors came over for a few minutes to chat.

Todd seems to be slowly getting over the effects of last week's chemo. He said it hurts a little more to swallow now (due to the radiation), but it still is manageable. Eating and drinking are still difficult things to manage. It seems to me that he hasn't really eaten anything solid or substantial in quite a while. Since he can only handle small sips at a time, drinking a few ounces of Ensure or fortified Instant Breakfast can take a really long time. And, if he is tired, he will fall asleep between sips...I think an alarm that would go off every 5-10 minutes would be good. Each day we start with good intentions regarding eating and drinking, and in the end we learn that it is whatever it is.

Eight more days of treatment. On the last day I think we will need a long nap. Maybe even before that!

A good morning so far...

Todd got up and took a shower and his meds.
"How do you feel?"
"Weak and tired and hungry"
He's lying in bed sipping his breakfast drink. Hopefully he will drink enough of it to feel better.

Thank you all for your comments. They lift me up like little wings!
Glen was taking Todd to radiation today, so I was going in to work early, only I got there at 11:00 am! I came back home after dropping off the boy carpool at WCI and Todd was not feeling well. He had vomited right after his first meds of the morning at 6:45 am. I left him rest, then washed and dried his face and put lotion on his face and neck. His neck is bright red from the radiation. The sides of his neck look dry and flaky and he has some slight scabbing at the front and sides of his collar area. I doused them with the "Udderly Smooth" lotion, which can't be applied closer than 3 hours before radiation. I combed his hair, which he is definitely shedding a bit. He just lay there, propped up on 6 pillows like a doll, the poor guy! He did drink a little gatorade and a little fortified Instant Breakfast while I showered. We finally got ahold of the radiation department and they told me to have him there "One-ish" instead of noon. Glen picked him up for the trip to UCSF after I had left.

I asked Glen to drop him off at Kaiser for his IV hydration and 3:20 appointment with the medical oncologist there. When I arrived at 3:20, the infusion nurse was poking him for the IV. After she tried again, unsuccessfully, I asked her if someone else could try. Donna's first try failed as well, and I suggested the heating pad process they had used over the weekend. After warming his arm for a few minutes, they finally got a vein to cooperate. It's tough when you're getting fluids bcause you're dehydrated, but too dehydrated to make it work.

Once he was hooked up, we all walked over to the doctor's office for his appointment. I went over his list of meds with her so she could refill a prescription and give us advice on dealing with the vomiting. She said that more antiemetic drugs were not the answer, as the vomiting now is a result of the radiation -- the thick mucus brings on the vomiting reflex (gross!). She suggested lots and lots of rinsing with the salt/baking soda/water solution and spitting, and using the Biotene mouthwash. Tomorrow Todd will try that before he takes any meds. I've fashioned a pretty good spittoon out of a 2.5 gallon plastic bottle. I left him to get his prescription filled and run home to check on the kids. Carolyn cheered me by playing some Christmas carols on her keyboard (she was practicing for her piano lesson) as I slumped on the sofa.
When I got back, the front of Todd's navy sweatshirt was covered in little bits of what? Dandruff? No, they were his whiskers! He had been rubbing his chin, and they were just fallling out like rain! He still has plenty left, but I guess he really doesn't have to shave if he doesn't want to. We finally got home at 6:30 pm and Todd climbed in bed, feeling cold. I wrapped him in 3 blankets and found Dash's knit hat to keep him cozy.

(I have finally figured out how to allow comments from non-registered users, so everyone is free to comment at will!--bb)

We make it to another weekend

Todd was nauseous after the chemo on Tuesday and so hasn't really eaten anything since then, except maybe part of a popsicle. (He has had fluids). At Thursday's meeting with Dr. Yom he was feeling really down, so unlike himself. She said he was doing great, medically (he's responding to the treatment, his skin still looks good (but very bright red from the radiation), he can still eat solid food (but he has no appetite), pain is not a problem (although nausea is). After Todd went off to his radiation treatment she told me that the feelings of depression kind of go with the territory. But when Todd gets depressed, I get depressed, and it's a feeling I truly hate.

I tried to get him to eat today, and he did have about a scant 1/4 cup of miso soup (the nutritionist suggested eating salty foods to help settle his stomach), and later, about a teaspoon of applesauce. At 1:00 I dropped him off at Kaiser for his IV infusion to help hydrate him. The doctors thought that if he was more hydrated, he'd feel better. When I met up with him in the infusion center he was throwing up. So much for food. I felt defeated...and went out in the empty waiting room to quietly wah wah it out. Alright. Then back downstairs to the pharmacy to order his refills. I'm becoming a 3x a week regular.

I know in talking to Joyce, and another woman who's husband was just finishing radiation, that the eating thing can be the absolute most frustrating for us caregivers. They don't want to eat. They have no appetite. It hurts to swallow. Food doesn't even taste good. Beef is nasty. Certain flavors of popsicles burn, as does pineapple juice, or any citrus. They feel bloated and or nauseaus most of the time. Or they hurt bad. I can see why two of Todd's friends lost 50 lbs each during this ordeal, and why the doctors insist it can be the most difficult challenge. I'm giving up directing this for the time being, as I need a break from the frustration. I provide Todd a glass of peach juice and one of Instant Breakfast made with whole milk and added fiber powder. I'm having an egg on toast. Carolyn's doing soup in a bread bowl. The other two teens are out for the evening.

Jazzy and I took a walk in the dark, and it was the best part of the day for me. We started out at dusk and walked to Mountain View and then up and back down Norris, Poppy Court and Hadden on the way back. Two blocks from our house it started gently misting. Then real rain--we ran home, steamy and wet. When we got back Todd was on the couch, watching the basketball game, his drinks still beside him.

Tomorrow(Sunday): another day. Todd has an IV at Kaiser at 9:00 am.

Two long days

Monday I picked up Todd at 11:00 and drove him to UCSF for his noon radiation appointment. Unfortunately, his radiation machine was broken, so after waiting nearly 2 hours we moved on to the appointment with his medical oncologist, Dr. Dubey. We discussed the chemo infusion happening tomorrow and she gave us a prescription for a higher dose pain patch, which Todd will switch over to as needed. Back down to the basement, we found that the radiation department was still running way behind. Finally, he was done--we didn't get home until 6 pm.

Tuesday, St. Patrick's Day. We leave the house around 7 am for Todd's chemo infusion at 8 am but run into nasty traffic, backed up way before the toll booth. We get there late, but nothing much is happening anyway. Diane, Glen and Todd's favorite infusion nurse is dressed in green for the ocassion, even down to a watch with a bright green strap! She gets Todd started. He must be more dehydrated than last time as he hardly leaves his recliner to use the bathroom (with the first infusion, it was every 15 -20 minutes!). At 12:30 I leave to take a walk and head down Sutter to Filmore and then up the hill to Broadway and a gorgeous view of the bay and the fabulous homes surrounding me. I get back and get Todd some lunch from the cafeteria: pasta salad and tuna salad; he eats a decent small portion.

The radiation machine is still broken and even though they knew we were coming down at 2:30 after the infusion, Todd does not complete his radiation until 4:50 pm. I knitted 2 hats today for the cancer patients, so it wasn't a complete waste of time! We talk to someone in the first floor radiation office to try and insure we get closer to our schedule -- we have friends and neighbors planning on driving, and we can't have them sitting there all afternoon (plus it is so wearing on Todd--he said he kept dozing off on the radiation table today and then jerking awake. Hopefully that didn't affect the placement of the radiation). One of the supervisers assures us tomorrow will be better. We hope so, as we get home again at 6 pm, so tired! Thankfully, the Jacknows have brought dinner!

Neighbors and friends have been wonderful about bringing dinner on Tuesdays and Thursdays, and we have had brownies and soup and pasta salad show up fortuitously. We are so thankful for all this, as dinner is just one more thing to add to the day's long list of tasks. The food has made us feel both nourished and cared for and I thank you Joyce, Glen, Chris, Dan, Jim, Christie, Christine, Carolyn, Anne, Peg and Sharon.

Neil often stops by over the weekend on his bike to chat for a few minutes and Tom came by today to pick up Earthquakes tickets and check in. It's nice for Todd to have those short diversions that take his mind off himself. He gets very tired if he keeps it up for too long, but short visits can be good!

As for me, I recharged a bit this weekend by going to my investment club meeting on Friday night, here in the neighborhood. Although we only had about half the group in attendance, it was nice to see everyone and catch up, have a glass of wine and relax. They are all so supportive, and came up with some good suggestions for me and additional offers of help when needed. Donna offered to drive us in her van on Fridays so Todd could lie down on the bed in back and sleep the way to UCSF and back. It may be something we definitely want to do that last week or two. Fridays, with the double radiation 6 hours apart, have really been wearing for Todd. This week, Ken took him for his Friday afternoon appointment and Todd totally enjoyed talking about soccer and the WC soccer club all the way there and back. By the time he got home around 5 pm he was sooooo tired. He didn't nap between the morning and afternoon appointments as he usually does, and didn't sleep on the way home as he usually does. (He sometimes forgets he needs to pace himself, and rest more). He was in bed the rest of the evening, and only came out for a few minutes to eat a couple of bits of food, and then crawled back under the covers.

Saturday, March 14, 2009

This coming Monday will mark the halfway point of Todd's treatment, and so far Dr. Yom is very pleased with the way things are going. On Thursday, she said he looked great (for where he is in the treatment plan) and said she couldn't see or feel the tumors anymore. (And "NO!, we are not stopping treatment. That has proven to be a VERY bad idea!"). His face looks thinner, I notice his neck more, as it looks sunburned; his voice is huskier, quieter (I have to buy a bell so he can ring it when he is in the bed and needs something. A friend suggested a china or glass bell, so I can smash it when this is over. Yes!). He moves slower, more cautiously. He seems fragile to me, and then he is his old self for a while and cracks a joke and all is good!

Todd has been very tired this past week. Constipation (a result of the drugs he's on for pain and nausea) comes and goes, and unfortunately he seems to be experiencing it more often, which means he feels too bloated to eat or drink much without vomiting. Nasty business. The amount he ate yesterday was miniscule. He is currently on 9 medications, including a patch, the easiest of all to handle, since he doesn't need to swallow it. Swallowing has become painful, as expected, these last several days and Dr. Yom said it will only get worse. Todd said it is unbelievably painful to burp.

Today I took Dash and teammate Derek to their soccer game over at Tesoro at 8:20 am. It was REALLY cold and windy. Luckily I had the dog blanket in the car to wrap up in (what's a little more dog hair, I say). Because they were really short of players, Dash was pressed into service as the keeper, so it was an exciting game (he did pretty well for being totally inexperienced, but no, he did not save the game. They lost 3-2).

Carolyn is in Lemoore, down near Fresno for her Association Cup soccer tournament. I was originally going to take her, but felt more comfortable staying close to home, so her coach kindly offered to take her with his daughter. I can't put the burden of caring for Todd on the kids. It's not a physical burden at all -- it's the mental worries (Is he eating / drinking / medicated enough? How is he feeling?) -- the constant followup that I try not to do to constantly, for his sake and my sanity. The kids are concerned, and frequently check in with dad, but's it's not at the same level or consistency, nor should it be.

This coming weeks brings his second (and last) chemo infusion. The doctors said this should not be a problem -- it will be the fatigue brought on by the cumulative effects of the radiation and the increasing problems with swallowing (eating and drinking) that will be the concerns. We will see how much longer he will be on solid foods. I have filled small custard cups with a few spoonfuls of various things (risotto, pasta salad, sweet potatoes, soup, tiny cubes of chicken, vanilla pudding) and set them on a tray in the refrigerator so he can "self serve" whatever appeals to him when he gets hungry and I'm not home. He said food is starting to taste very bland, so between that and the frequent bloating, he is not eating much.

Having drivers this week was wonderful. Glen drove on Monday, Roni and Wednesday, and Ken took the Friday afternoon shift. I drove for the Tuesday and Thursday noon appointments and the Friday morning one so I could be there for meetings with the oncologists and the nutritionist.
The nutritionist suggested papaya (fresh, or 100% juice) to help thin the thick oral mucus he is starting to experience. Last week she gave us a recipe for "Power Pudding" for constipation: 1 c applesauce, 1 c ground flaxseed and 3/4 c of prune juice. Dosage: 2 T followed by a big glass of warm water. Ug! Only works if you're not too bloated to drink the warm water with it.

21 more to go...

Todd has undergone nine of his thirty treatments as of today, March 6th. We saw Dr. Yom, his oncologist, again yesterday. She examined his cancer sites (tonsil and lymph nodes) and said he was doing very well. Keep up the good work! He's feeling better, eating more (small meals, but more often) and the only problem seems to be constipation. We got more drugs for that, which he will try on Saturday when he is home all day. I remember what Glen told me: you get drugs to help your body deal with the treatment. But the drugs have side effects. So you get drugs to deal with those side effects. And sometimes drugs to deal with the side effects of the drugs dealing with the other side effects...and so on.

Todd has many drugs right now (mostly for the nausea), and more, different kinds for later. Plus all kinds of mouth rinses and a spray, gel, gum and special toothpaste with extra soft brush to help with the nasty mouth sores he will have next. I finally put away everything he isn't using now, as the countertop was getting too cluttered! He has been organized enough to write it down on a post-it each time he takes something.

I do need to create some kind of daily schedule for meds and the like because we keep forgetting to put the lotion on 3 hours before radiation to protect his skin from the "sunburn effect." His neck was bright red today when he came out after his second radiation session and I felt badly that I hadn't remembered about the lotion. On Fridays we have to be at UCSF at 7:45 am for radiation and an appointment with the nutritionist, and then back again at 3:30 pm for his second radiation session (the 2 sessions have to be at least 6 hours apart). We didn't get up early enough this morning to put the lotion on the required 3 hours ahead of time (no way were we going to get up at 4:30 so he could shower and then put it on!).

Driving to UCSF usually is a 50 minute drive each way, but can be longer depending upon traffic. Todd normally dozes on the way home, and then heads straight to bed for a nap or at least a rest of half an hour or more. He does have periods of energy, but you can't predict how long those will last. He told the doctor that in the last 2 days he's had short periods where he felt "perfectly normal," and that it was a little depressing when the naseau or bloating or fatigue came back.

Yesterday I could hardly keep awake the last few miles home. I cracked the window open and bit my fingers to stay alert! Todd was sound asleep. When we got home I decided to take just a tiny 15-minute nap before I went back to work. I slept for 2 solid hours! Thanks to the advice of Joyce and Glen, I put out an S.O.S for help driving to UCSF and for meals twice a week (Tuesdays and Thursdays). Everyone has been wonderful! Food has been arriving and I now have some help driving for the remaining 4 weeks. Although I love being there for Todd and really don't mind the driving (except when I am tired), it definitely has been crazy trying to get things done at work. Bill (and Jess and Shirley) have been so supportive of me during this time. A blessing, they are!

Today (Friday) was a double appointment day and we didn't make it back from the afternoon 3:30 radiation until 5:30. Then I went to Safeway for a few things (applesauce, non-citrus juices, whole milk) and stopped at Kaiser for yet another prescription. Lauren was still at work, but Carolyn and I met up at Kaiser's parking lot, where I tossed her a bag of Swedish Fish to take to the movies with her. Dash was at futsal practice, so the house was quiet when I finally got home.

Todd likes to have dinner as a family whenever possible, but can't deal with the sight of a lot of food, so Carolyn takes great pains to arrange candles and other decorations on the table so Dad cannot see the serving dishes from where he is sitting. We use little dishes for him, just a spoonful of this, 3 spoonfuls of that at a time. The nutritionist said that was important, not to overwhelm him with food. He enjoyed leftovers of Christine's ziti (including half a large meatball) today, and Carolyn's enchilada pie with fresh avocado was a big hit yesterday. Dash made sure there were no leftovers on that!

I am looking forward to the weekend, when we have relatively few obligations (just a soccer scrimmage here and there). I want to go out and see the tulips blooming in the garden and pull some weeds. It is good therapy, and (un)fortunately I have enough weeds for weeks of therapy!

Wednesday, March 4

Last week when Todd had his meeting with Dr. Yom, the radiation oncologist, she and her resident looked in Todd's mouth and palpitated his lymph nodes. "Excellent!" she said. "I can see that the tumors are already shrinking." Dr. Yom is not one to sugarcoat news (so we've heard) so this is great news after just 3 days of radiation! It's got to be easier to go through painful treatments when you KNOW they are working, as opposed to just hoping that they are working.

I have been concerned about Todd as he hasn't been eating much at all since last Wednesday. He has already lost the 10 lbs (cheesecake) he gained before his treatment started on Feb 24 (just over a week ago). He has just been feeling so bloated. Earlier this week we changed to bird-like portions on saucer-sized plates because just seeing even a normal portion of food made him feel sick. Then, last night at dinner he had TWO tiny portions of Christine's baked ziti. The breakthrough came this morning when he ate half a scrambled egg portion and a WHOLE PIECE OF TOAST! I drove him to his noon appointment and back, and after a 15 minute rest he was ready for lunch: applesauce and a mini quesadilla. I went back to work and he called me with the good news -- he was still hungry after that "lunch" and ate more! Maybe the effects of the chemo are finally dissapating. Dr Yom says he should stay on the anti-nausea drugs anyway.

I sent out an email last week to neighbors, friends in our gourmet group, and my ladies' investment club asking for help during Todd's remaining weeks of treatment. Both Joyce and Glen Thomas (Glen is a UCSF cancer treatment alum who when through this last spring) said to ask for help early, because it is very hard. They were so right! With no family west of the Mississppi, I quickly realized I couldn't handle driving to the city 6x a week, caring for Todd, working, and keeping up with the kids and their activities.

Roni Jacknow organized a sign-up email of kind people willing to bring dinner twice a week and / or help drive Todd to his appointments. These first 2 weeks I have just been taking time off work, which makes for a chopped up day. I work a bit in the morning, run out at 10:50 to pick Todd up at 11:00 and run back into work somewhere around 3:00. Having drivers will help me a lot, although there are several appointments a week that I will still drive to so I can talk to the doctors and the nutritionist. Having dinners delivered has been a blessing, as twice a week I don't have to even THINK about what the kids and I are having!

Lauren's been great about picking up prescriptions and driving to Safeway for popsicles or whatever Dad needs today. She works after school though, and usually has a lot of homework, so she doesn't have a lot of spare time.

Todd got our taxes done today -- I don't know how he did it (he was curled up asleep when I got home from work at 6 and said he felt really tired). He had been so lethargic over the weekend and for the first part of this week that I thought he was going to be like this or worse the whole time. He worked a little bit on the taxes yesterday, but to tell the truth, I was thinking that I would have to figure out Turbo Tax in my spare (?) time. (Nooooooooo!)

It's good to see him with a little more energy. He is doing a good job today of pacing himself: taking short rest and nap breaks throughout the day, and trying to eat more often. Today he's probably eaten the equivalent of 1 normal-sized meal, which is a big improvement.